Fig. 1

Overview of project. ALSAQ-5 = Amyotrophic Lateral Sclerosis Assessment Questionnaire; ALSFRS-R = Revised Amyotrophic Lateral Sclerosis Functional Rating Scale; CAG = Clinical Advisory Group; CTT = Classical test theory; DCE = Discrete choice experiment; IRT = Item response theory; PAG = Patient Advisory Group; PlwALS = People living with ALS; PROQuALS = Patient Reported Outcome measure of Quality of life in Amyotrophic Lateral Sclerosis; PROM = Patient reported outcome measure; PWM = Preference-weighted measure; QuALS = Health-related quality of life in amyotrophic lateral sclerosis